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Lurie announces overhaul of pediatric intersex surgery policies
by Matt Simonette
2020-07-29

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Ann & Robert Lurie Children's Hospital announced July 28 that it will no longer perform irreversible genital surgical procedures on intersex patients until patients can participate in making the decision.

The surgeries have long been controversial, and have raised the ire of activists and others. Lurie has been the focus of that anger and was the site of several protests.

"Lurie Children's shares a commitment to support and advocate for the intersex community within our walls and the larger community," said hospital officials. "We recognize the painful history and complex emotions associated with intersex surgery and how, for many years, the medical field has failed these children. Historically care for individuals with intersex traits included an emphasis on early genital surgery to make genitalia appear more typically male or female. As the medical field has advanced, and understanding has grown, we now know this approach was harmful and wrong. Ann & Robert H. Lurie Children's Hospital of Chicago and our Sex Development Clinic recognizes this truth. We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care and we apologize and are truly sorry."

Lurie's statement said the hospital's physicians would not be performing irreversible genital surgery on infants who are intersex, unless deemed medically necessary, nor would they do so in the immediate future for patients with congenital adrenal hyperplasia (CAH). Officials added that a clitoroplasty had not been performed at Lurie in the past five years.

According to the Lurie statement, "Over the next six months, we will carefully and critically evaluate whether the same policy requiring assent/consent from intersex and CAH patients should apply. To answer this complex question, Lurie Children's will hire an individual with CAH and/or an intersex person to help us convene a diverse group of stakeholders, including LGBTQ+ individuals, CAH and intersex patients and community members, families, medical ethicists and clinicians to investigate the ethics of CAH surgeries in infancy. This group will outline its findings in a white paper and/or report which will guide our future practices related to surgeries on CAH patients."

Signatories on the statement included Lurie President and CEO Dr. Thomas Shanley; Chief Medical Officer Dr. Derek Wheeler; Urology Division Head and Reconstructive Pediatric Urology Co-Head Dr. Earl Cheng; and Adolescent and Young Adult Medicine Division Head Dr. Robert Garofalo.

ACLU of Illinois released a statement praising the change: "We welcome Lurie Children's Hospital's announcement that it is suspending medically unnecessary surgeries on intersex children," said Ed Yohnka, the roganization' s director of communications and public policy. "Lurie's recognition of the real harm done to intersex people by these surgeries is significant. This change comes after years of advocacy by people who are intersex and family members and allies, including by Pidgeon Pagonis, Sean Saifa Wall and interACT.

"We congratulate these advocates for their hard-fought victory and are proud to have played a supporting role in this effort. The policy recognizes and honors those who have been directly harmed by these surgeries. We are pleased that Lurie is taking steps to recognize that Intersex bodies are not broken and has finally changed this harmful policy."

Openly LGBTQ members of the Illinois House of Representatives also issued praise.

"We thank the professionals at Lurie Children's Hospital of Chicago for the thoughtful, careful manner in which they engaged in conversations leading to a change of policy related to care of intersex children," they said in a statement. "The policy reflects an evolving medical standard, as well as an evolving understanding about gender in our society. It is forward-thinking and reflects the very best of one of Chicago's premier medical institutions.

"We also applaud the advocates, including intersex people and their family members, who have worked tirelessly with Lurie to make the change that caused this decision. The courage of advocates telling their own stories and sharing their real life experience was powerful and moving. And it brought real change. This is an inspiration for all of us, and will benefit generations of children to come."

Signatories on the July 29 statement included state Reps. Lamont Robinson, Yoni Pizer, Greg Harris, Kelly Cassidy and Sam Yingling.


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